can you help me here

[Anonymous]

I had posted on here a long time ago. My older daughter has severe food allergies. we assumed that my younger daughter had the same. we had her tested, and, nothing. so, since she was allready on neocate and she still has reflux and has issues with food (ie bm’s/vomitting) they are labeling her as protein intolerant. Can anyone help me with this? I don’t know where to go to ask questions of people who may have the same problem. Please point me in a direction..I have so many questions!
Thanks!

[hellbennt]

hi & welcome (back)

if you go to the ‘main’ MSPI page (stickied I do belive in the MSPI forum &, if it’s not there, it’s certainly linked to from ‘Groupie Intro,’ which is stickied in the Introduce Yourself Forum)

go to page 2 & scroll to ‘google cache’

there you will find an EXCELLENT explanation about protein intolerancess allergies

[Anonymous]

Did they mention anything about Food Protein Induced Entercolitis Syndrome (FPIES)? That is what my dd was diagnosed with. She was on only neocate until just a few weeks ago (around 16 months old). That is the best solution…NO OTHER FOODS! I know it will be tough but it is the best if that is what she has. Addy ate 7 ozs every 3 hours of Neocate from 7 months until 15 1/2 months and if tylenol is needed, do only dye free…the less added things, the better.

Try doing a search here of “FPIES” for other posts about that.

Good luck and I hope you find some answers! Email me at tracy t williams @ gmail.com (without the spaces) if you want.

addysmommy2007-5-20 12:22:13

[Anonymous]

addysmommy wrote:

Did they mention anything about Multipe Food Protein Intolerance Syndrome (FPIES)? That is what my dd was diagnosed with. She was on only neocate until just a few weeks ago (around 16 months old). That is the best solution…NO OTHER FOODS! I know it will be tough but it is the best if that is what she has. Addy ate 7 ozs every 3 hours of Neocate from 7 months until 15 1/2 months and if tylenol is needed, do only dye free…the less added things, the better.

Try doing a search here of “FPIES” for other posts about that.

Good luck and I hope you find some answers! Email me at tracy t williams @ gmail.com (without the spaces) if you want.

wait, isnt FPIES food protein induced entercolitis? this is different than MFPI-multiple food protein intolerant. FPIES is usually more severe prolems in the GI tract that leads to blood in stools etc. FPIES kids are usually on medical formula only, where as MFPI kids can eat a variety of foods. my son is MFPI.

[Anonymous]

FPIES-

What is the Food Protein Induced Enterocolitis Syndrome?

Food protein induced enterocolitis syndrome, or FPIES, is a disease of infants and young children that mimics food allergies. Symptoms typically include vomiting, diarrhea (sometimes bloody), dehydration and low-blood pressure. The child or infant can appear lethargic, and over time can have problems gaining weight. Hospitalization for possible severe infection in common in children with FPIES.

Symptoms of FPIES typically occur shortly after consuming the culprit food. Vomiting starts within 2 hours after eating the causative food, and diarrhea typically starts within 5 hours of eating.

While FPIES can mimic food allergies, symptoms typically only consist of gastrointestinal symptoms, and other body organs are not involved. There is no skin involvement in FPIES (hives/swelling, itching), and no respiratory symptoms (runny nose, sneezing, coughing, or wheezing), which are commonly seen in true food allergy. And, typical allergy tests to the causative foods are negative in FPIES.

What Foods Cause FPIES?

The most common foods implicated in the cause of FPIES are milk and soy formulas. However, solid foods can also cause the problem, most commonly cereal grains (oats, rice, barely), legumes (peas, lentils, beans) and poultry (such as chicken and turkey).

Foods that are typically tolerated by children with FPIES include breast milk and hydrolyzed casein infant formulas (such as Alimentum).

How is FPIES Diagnosed?

FPIES is typically a clinical diagnosis made by having a history of symptoms consistent with this syndrome after eating suspect foods. An allergist may perform allergy testing to ensure that true allergy is not present. There is typically no need to perform an oral food challenge in young children to prove that foods are causing the symptoms, and this can be extremely dangerous.

How is FPIES Treated?

Avoidance of the suspect foods, as well as other foods that commonly cause the disorder, is the mainstay of therapy in children with FPIES. If the child has FPIES caused by a cow’s milk based infant formula, soy formula should also be avoided, given that soy can also commonly cause this syndrome. Avoidance of cereal grains, poultry and legumes is also recommended. Most fruits and vegetables are not causative foods and are typically tolerated in children with FPIES. Learn more about avoidance of specific foods.

Once symptoms do occur, treatment should be sought in an emergency room given that children may develop low blood pressure along with vomiting and diarrhea. It is recommended that the diagnosing physician (usually an allergist) write a letter explaining that the child suffers from FPIES, and the recommended treatment course if there is an accidental ingestion of the food. The child should be monitored for a minimum of 4 hours after eating the culprit food, as it may take this long for symptoms to occur.

Once symptoms do occur, intravenous fluids and steroids are typically required. Injectable epinephrine is not typically needed but may also be given, along with other injectable medications if the child’s blood pressure remains low.

At What Age Does FPIES Resolve?

Typically, FPIES resolves by age 3, meaning that the child is likely to be able to tolerate the culprit foods after this age. However, parents should not attempt to determine if the child can tolerate the food at home. Rather, an allergist may choose to feed the child the culprit food under close medical supervision, such as in the doctor’s office or in the hospital. It is recommended to perform these oral food challenges with an intravenous catheter in place.

Are There Other Non-Allergic Diseases Caused by Foods that Mimic FPIES?

Another food-intolerance, called dietary protein proctitis, is characterized by blood-streaked stools in very young infants, usually starting at 1-2 months of age. These children do not have vomiting, and otherwise appear well. This food intolerance is often related to cow’s milk or soy formulas, or due to the presence of milk, soy or egg protein in breast milk. These children typically can tolerate the causative foods at about 1 year of age.

Dietary protein enteropathy most closely resembles FPIES, with children experiencing vomiting, diarrhea and difficulty gaining weight. These children lack severe symptoms of lethargy and low blood pressure. Symptoms begin in infancy to 2 years of age, and typically resolve by 3 years of age. Culprit foods include cow’s milk, soy, cereal grains, egg and fish.

http://allergies.about.com/od/foodallergies/a/fpies.htm

nataliachick72007-5-20 11:57:8

[Anonymous]

sorry, lack of sleep last night with addy teething AGAIN…I corrected my mistake.

My dd was diagnosed with MFPI first only to find out trialing new foods was just causing her to digress bc she actually had FPIES. FPIES is much more serious than MFPI. Since she was having other issues with food, thats why I suggested FPIES. With FPIES any foods are unsafe foods until the child outgrows it. And if you continue trialing new foods and the child does have FPIES, a g-tube is sometimes necessary. That is in severe cases. It wouldn’t hurt asking you doc about FPIES. We trialed every veggie until I said enough is enough…and finally after going to TONS of peds, allegerists and GI’s, she was diagnosed. We could have saved her a lot of pain if we had known ahead of time what she had, and gone with our gut and stopped the food trials. Since FPIES, isn’t widely known and I had not heard of it until Addy was diagnosed, I just wanted to provide information.

addysmommy2007-5-20 12:29:5

[Anonymous]

Hi Sarah. Welcome back…

I’m sorry you need to be here. Sounds like you have your hands full with two little ones with reflux/food issues only a year apart!

I have a few questions for you. What symptoms more precisely does Maggie have? When and how did you have her tested? She’s still pretty young (7 months, is it?) and I don’t know too much about the reliability of allergy testing in babies that young. How old was your first child when she had her testing done?

When they say “protein intolerant” has she tried any foods or is she purely on neocate? Has she had any testing like an endoscopy done to see if there is damage to her esophagus? Some babies have something called E.E. (eosinophilic esophagitis) which is basically esophageal damage and mimics symptoms similar to reflux, but when they do the endoscopy they can see the damage caused by the allergies.

Good luck. I hope that you can find answers soon. Given the history with your first daughter, I certainly wouldn’t rule out the possibility of allergies at such a young age.

[Anonymous]

We had allergy testing done last month. Blood test and skin test. The allergist also does a lot of other stuff to look at with the blood test. different levels of things..ketones and such and celiac tests. I’m not sure of it all, but only one or two things seemed a bit off, but nothing allergy wise. We had my older done early too and she came up positive right away. Maggie came up with nothing. Her main symptom is vomitting, though she will get diarrhea if she gets too much of a food that irritates her. Though, too much never seems like a lot. Our allergist is great, but he doesn’t know much about this- the label just came bc I happened to ask what else could be her issue if it’s not a food allergy (we had a terrible time after having her try rice cereal and then bananas and sweet potatoes) and he remembered talking to another allergist at a conference about protein intolerance. He called the other doctor who is supposed to be the local “expert” and he apparently agrees to the diagnosis. Maggie has a really hard time with bm’s if she doesn’t have a bit of something to help her go-but every med they have given to help has just caused her pain. hence, trying the food to help her not have such hard bm’s. I just didn’t realize it could cause such bad things in one so little.
My kids keep growing, and are big for their age, which is sometimes why people don’t always want to help. And yes, they are close in age. Which is fine. We have Cecilia’s allergies under control. Was just prepared for Maggie to have them too..not something else…
It’s their sleep patterns that I sometimes think will be what kills me! 🙂
We see the allergist again on Tuesday. Should I be seeing another doctor (GI or anything)? Should I have him give me a specific label (FPIES/MFPI)? He thinks it is ok to try her a food at a time, starting with the fruits since those, according to what he has read, are the least offensive. right now she is great with pears and apples. she has thrown up just about every veggie we have tried and oh, i am afraid of what he will say about trying grains. I don’t mind stains in the carpet, just don’t like to her to hurt. Prunes were just awful! She just wants to eat so badly! she starts sucking her lips when she watches us eat. it breaks my heart. esp to think that we are on one meal a day right now and, oh, if we have to cut that out, i think i’ll cry for her. (that we had to for her health and that she will be unhappy to not get it)
Our ped is gov’t (military) so she doesn’t really know anything I don’t tell her. At least they just started carrying the neocate at the clinic for me so I can stop spending a whole paycheck on it. That was a fun 5mths of fighting.
I am just not sure what I am doing. I feel like no one knows specifically what this is or what to tell me to do. Maybe I will just have the allergist spell it all out for me as best he can.
I’ve known that she has had a problem since the beginning. All her symptoms were like Cecilia’s, but worse..and with no outward signs (hives/eczema). I was actually relieved when we were put on neocate. Poor thing slept after being up and not able to eat for four days bc I couldn’t get anything to stay down in her.
I hope this made a bit of sense. I’ve tried to answer as best I can while throwing in a few questions of my own. I will read all the info. I’ve been trying to read what I can find, but it seems to be sparse and non-specific. We just seem to have more vomit than anything else. Even hubby said yesterday that this is just ridiculous that a little one should have to live this. And I fully agree. Just need to figure out what to do…..
Thanks for the quick replies!

[Anonymous]

With the skin testing – did you get the print out? They should have measured each welt. They do a *test* welt that has nothing in it – let’s say that measures 2-2. They also do a *histamine* welt that everyone will respond to – let’s say that measures 20-15. Now, let’s say they tested her for dairy and it came back 4-4. That is quite a bit less than the 20-15 but it is not down to what the TEST welt was. Let’s say they also tested for soy and that was 5-1. Same thing again. This is what happened with Carson. The allergist said he is not allergic to those things. The number is not where it needs to be for an allergy. BUT, I KNOW that those things bothered him and he said they very well could show up slightly and be intolerances. With intolerances, the immune system does not get involved so it is harder to detect.

That being said, I would ask for the read out and see how the numbers vary on the skin prick testing.

Carson was tested for celiac but our peds gi specialist said that you have to take a biopsy from the intestine to get a true reading on this. ??Just what I was told??

I hope this helps. Let me know if you got the printout from the skin prick testing.

Gotta get LO ready for bed.

[Anonymous]

there were no welts, none. except for the control (histamine) which was huge (and I think they gave it a 3-4..I’ve only heard of numbers to 4 for skin testing)
I kept looking and looking since my older daughter had huge welts almost instantly both times she’s been tested. first time she actually swelled really bad even her feet in her shoes! they cut the dose of egg to 1/1000 for her this time and she still was a 3 in less than a minute. I couldn’t believe there was nothing on Maggie. They had three nurses and the doc come in and double check since they were so sure she was going to have multiple food allergies bc of the symptoms. Our allergist says any response (blood or skin test) at any number, even if it’s not the “typical” number for a reaction, is to avoid the offender at all costs.
I guess that is where I am at a major loss with Maggie. I am not sure what to avoid. I mean, what do you do with a kid that throws up prunes, bananas, sweet potatoes, and other veggies? I kind of got avoid proteins (meats/beans and such) but what about this other stuff? how does that fit in?
I have no true idea about celiac.. afraid of grains right now.
Our allergist is awesome, though. he gives us copies of everything and is willing to help as much as he can. so much better than the last one i had to fire. Any ideas as to what to ask/expect from him? I know he will do all that he can, but as we are the only case of this, where do I point him??
You guys are awesome! I should have come here a month ago with all these questions. Could bang my head for that!
Thanks!

[Anonymous]

Boy, I can’t believe the welts didn’t read larger than the histamine. Our numbers were up to 44. The Control was around 2-3 or 1-3 or something like that. We must have had different testing done. However, I still can’t believe there were no welts other than the histamine! Carson had a welt for each item. Many of the welts were the size of the control or smaller but he had a welt in each spot. ?? I don’t know what to say and feel so bad for you. Do you think it is just that the reflux is not under control and everything is coming up ?? I know you said she wasn’t refluxing but ?Maybe? With our oldest, he was put in the hosp and under watch for 48 hours – that is how our Peds GI SPec and I met. He said – this kid is refluxing. I just don’t know but I feel so bad for you.

[hellbennt]

there’s a chart of how/what foods to introduce to an allergic child

look on the ‘main’ mspi page (top one in the MSPI forum) and also look for “Reidun’s info & gathered info”- it’s in the TED forum I think?

these should help you?

[Anonymous]

This is how our GI and allergist explained it to us concerning proteins: All foods have amino acid chains in them which are proteins. Amiino Acids are the building blocks of proteins. That is why some kids can’t tolerate any proteins (all foods) except for Neocate or formula like it bc its amino-acid based formula (no whole protein chains). The proteins are broken down already so the body doesn’t see them as offenders.

[Anonymous]

Thanks for explaining the protein breakdown.
I am not sure how to know if it would just be extreme reflux. How can you tell? Cecilia had projectile vomitting of her formula until we got to the right one (nutramigen) and Maggie only did it with the soy. Poor thing would throw it up while she was eating and then go after more bc she was so hungry. She won’t take nutramigen and she got worse on alimentum. She is great on the neocate (except for the constipation)
What can I do to find out that reflux may be it? She just, well, throws up after eating solids. Not all, just most. And it’s usually a couple hrs later and the most times she has done it is 5 in a day. So, she has her “lunch” at about 11 and by 2, if she hasn’t tossed it back out, she’s most likely not going to. But, if she has, expect a couple times (avg is three)
prunes were just the worst. poor kid pooed the worst poo’s she has ever had and was up all night long throwing it up too. 🙁
ugh. sorry if these keep seeming off. Out of the 8hrs of sleep I attempted, I had to get up 4times.
Thanks to all!

[Anonymous]

Sarah: I see that Carson and Cecilia are about the same age and both on formulas yet and both with allergies. I find it so hard to find foods that Carson CAN eat, yet WILL eat. Most of Carson’s calories come from his bottle before bed of Neocate. What do you feed Cecilia?

I think testing (upper GI, ph probe) is the only true way to find out if it is reflux. With Carson, our doc says once the allergies are gone, the reflux will prob be gone also – but you and I know you can’t wait out allergies -that could take a long time.

TnBEich2007-5-21 14:44:55

[Author]

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